Special Needs

Stopping by to intro...with some SPD ?s as well

MrsT0514MrsT0514 member
edited August 2014 in Special Needs
Hi there! Im a regular over on the parenting board and recognize a few parenting peeps over here as well, so I decided to come over and intro. I also come with some questions :)

My son is 19 months now (baby #2 is on the way and due in January). We've been working with EI since DS was about 16mo. Originally the focus was speech/pre-language (he has a mild expressive language delay, but receptive is age appropriate, so they arent recommending ST right now). The new focus we have now is balance and sensory issues. He just started PT once a week, and we are in the process of getting a 2nd opinion from ENT (he's always congested, pulling at his ears...we started allergy meds almost 2wks ago and we're starting to see some improvement with his balance and speech, but he's still congested and tugging his ears (but no fevers or sign of infection), so there are still some concerns with possible tubes/adenoid removal) that we'll need to rule out.

He had a full Neuro consult at our local children's hospital 2 weeks ago, and the Neuro says she doesn't see anything overly concerning neurologically (i.e. brain injury, etc) and doesnt even recommend any imaging right now (which is a huge relief!). But she was the one who urged us to get a 2nd opinion from ENT. She isn't convinced that there are no ear/adenoid issues at play here. She did mention Developmental Coordination Disorder as a possibility if all other medical causes are ruled out...but otherwise, she did not seem phased by his balance issues...and was somewhat insistent that alot of this is pointing to ear issues.

Aside from that, through working with EI, they've also mentioned that he seems to be a sensory seeker. He makes great eye contact, communicates effectively through pointing/gesturing/lots of babbling, engages/socializes very well, and is easily engaged with an activity, he is constantly on the move, needs to touch/explore everything, doesnt sit still for long, tends to be a bit rough with the dog and cat, and generally seems to crave a lot of sensory input. They also mentioned that possibility of some of the balance/coordination issues being sensory related.

Although I am very relieved that neuro-related stuff isn't a concern, I'm feeling a bit tired and frustrated. With all these doctor visits, I cant help but feel like maybe we're fishing for something that isn't there, KWIM? I'm certainly not trying to borrow troubles. Like maybe we should just stick with the PT/OT for a while and see where it goes? Idk. At the same time I dont want to be ignorant either and I just want my kid to enjoy being a kid, while getting the extra help he needs.

I'd love some more info on SPD and sensory sensitivities and helpful therapies, from those with experience. Sorry to be so long winded. I also just wanted to say hello! You ladies seem like a very welcoming and knowledgeable group also, and I would love your feedback!

Baby Birthday Ticker Ticker

Re: Stopping by to intro...with some SPD ?s as well

  • Welcome to our board!

    Baby Birthday Ticker Ticker
  • @ClaryPax‌ the pedi thus far has not been concerned, but was the one who referred us to neuro and ENT to rule things out. Autism is not a concern, as he's making great eye contact, his receptive language is on point, he's easily engaged, and communicates very purposefully/effectively even though he doesnt have many actually words yet.

    They havent suggested a developmental pedi at this time, and have just been supportive of our involvement with EI services. The pedi seems to think this may just be an isolated motor delay and that he'll catch up with PT/OT. The EI therapists we're working with are the ones suspecting that a lot of this is sensory-related so that's out main focus now. They actually just did a follow up speech eval at my request last month and determined that his expressive language is not delayed enough to warrant ST right now...so I guess thats that. So the focus for now is sensory I guess.
    Baby Birthday Ticker Ticker
  • Loading the player....
  • Welcome!!! My boys have neurological issues and have mild sensory seeking issues.  DS1 is always on the move, he didn't walk until 3.5 and likes rough housing.

    For us, we just try to provide him with opportunities to get as much sensory input that we can.  He's going to be sensory seeking because he's not doing the typical stuff a 4 yo can.  He can't run or jump, or sumersault, or any of that.  So we try to mimic a lot of that and it really helps him.  A lot has helped because he's recently figured out how to spin in circles.  He'll usually do it 2-3 times until he's dizzy and falls over and it seems to really give him the input he craves because then he'll move on to playing and being calmer.  

    Hopefully will time things will be clearer for you and your LO.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • MrsT0514MrsT0514 member
    edited August 2014
    I think the most frustrating part is just the unknown. When I have the therapists at EI saying "well the balance/sensory seeking issues are concerning, let's do this to work on them" but I have the doctors saying "I dont see anything concerning, this may very well be something he just grows out of with him/PT/OT type of thing" or "he'll get there, it may just take him a little longer" it just feels like I'm stuck between a rock and a hard place. Which dont me wrong, its a relief. Of course, any parent's hope is that their kid may just grow out of certain issues and not have to deal with certain issues/delays re: development, but at the same time it sucks to have to go through the whole process of ruling out, doctors visits, evals, etc etc.

    I know he's so young that its all just fun to him right now, but its tiring at times for me. But I guess I just need to Change my perspective and be grateful, bc things could be much worse.
    Baby Birthday Ticker Ticker
  • @ToastieSimons‌ yes, the imitation totally works, I agree! The therapists have even said DS has excellent imitation skills, bc if you do something, he'll watch intently and then go ahead and do it (or attempt to)..so thats encouraging! I guess we'll keep working on that.

    I mean, also, the difference we've seen in his vocalizations since starting the allergy meds has been great too. He's started making animal noises when prompted now "moo" for cow "tweet" for bird and he snorts for pig, which he wasn't doing a few weeks ago. His balance has also started to improve which is awesome! I guess the whole thing is just so perplexing to me. I hope this new ENT has some answers.
    Baby Birthday Ticker Ticker
  • @ClaryPax‌ I also meant to add, the pedi also thought the best course of action for now was to see the ENT and Neuro to rule things out, continue with PT/OT and then if no improvement is seen, we can revisit when he is 2. The encouraging thing is that they said they see lots of kids just like my DS at his age, having some balance/walking issues going on and then by 2 they're doing fine...so I can only hope that is the case!
    Baby Birthday Ticker Ticker
  • MrsT0514MrsT0514 member
    edited August 2014
    Thanks for the info. @-auntie-‌ is a comprehensive eval something that can only be administered by a developmental pedi? I guess I'm wondering why our pedi or any of the EI specialists havent mentioned this.

    Eta Forgive my lack of knowledge re: this, but the neurodevelopment center we had his Neuro consult/eval at also evaluates/treats behavioral/developmental such as autism/adhd/developmental delays, etc. Wouldn't the Neuro have mentioned/covered this as a concern? Or is it something separate I'd have to request?
    Baby Birthday Ticker Ticker
  • Hi! My oldest (6) was diagnosed with SPD two years ago (tactile-avoiding, movement-seeking), and she got an ADHD diagnosis last year.  We did OT for two years.  The tactile stuff is much better, and her balance and coordination have improved, although she still bumps into things more than my NT three year old does.

    Welcome to the board!
  • This content has been removed.
  • MrsT0514MrsT0514 member
    edited August 2014
    @-auntie-‌ I never physically filled out a questionnaire, but was asked all of the questions on the m-chat by both the pedi and the neuro (as well as Early Intervention). But thank you so much for the insight. We are set up to see the ENT sept 10th and a follow up with the neuro on sept 23rd, so if we come up empty handed from ENT, i'll be sure to ask about this at the follow up neuro appt.

    Like I said, I certainly dont want to borrow troubles, but in the same breath I dont ever want to be that parent blinded by ignorance and assume "nope, its not this/that...can't be". But in the case of full disclosure here, I feel like fear can dictate so much sometimes...I'm just plain scared and nervous.

    @McRib‌ thank you for sharing. I'm glad you were persistent and able to figure out the cause. I see what you mean about having to use your gut to filter stuff out. It's a tough gig, I'm seeing! I can go from feeling relieved and encouraged to feeling frustrated and nervous all in the same day, depending on who I talk to. It sucks. Especially bc I dont have many people IRL that know anything about this stuff.

    My gut has been telling me all along that this may have a lot to do with his ears/adenoids, and to push harder at the ENT, so that's where I'm going to start, I guess...but I'm also not the one with a medical degree, so thats that. But now, with the additional urge of the neuro as well as EI that a lot of this sounds ENT-related, its definitely something worth investigating.
    Baby Birthday Ticker Ticker
  • Also @McRib‌ I just checked out that website and it looks like you really have a team of all-star doctors on your side! That's amazing! Good for you for being proactive and getting the right team of specialists in your corner!
    Baby Birthday Ticker Ticker
  • @fredalina‌ thanks for sharing! When EI first brought up the fact that DS seems to be sensory-seeking, you were one of the first ple I thought of, bc I remember your past posts re: Charlotte and your journey navigating through all of this. Sorry to hear you're in a frustrating spot right now. I can completely understand why you're feeling that way.

    The therapist that comes out from EI every week has been educating me a lot on sensory differences, but man, is it such a confusing and intricate web to navigate through. Its all very confusing, but once its explained, it oddly all makes sense.
    Baby Birthday Ticker Ticker
  • ClaryPax said:

    I think all you can do it take it 1 day at a time 1 appointment at a time.  My kids don't have SPD, but I do think you are doing the right thing in following it up like you said you don't want to blindsided later on or feel bad that you didn't get intervention sooner.  However, it is also a waiting period because of your child's young age.  I've said it many times, but I am hopeful the ENT can shed some light.  Please update us after that appointment. 

    Yeah, thats what most of the docs have reiterated also. The pedi, the neuro, the therapists with EI...all of them have said, this age group in general is always an added confusion bc its sort of the in between "watch and wait" stage where things will either happen naturally or they wont. So I get why they want to sort of wait andsee how things go with therapy, but at the same time, the whole waiting game is just plain nerve wracking.

    But I'll keep you posted after our next appt!
    Baby Birthday Ticker Ticker
  • -auntie- said:
    MrsT0514 said:
    @ClaryPax‌ the pedi thus far has not been concerned, but was the one who referred us to neuro and ENT to rule things out. Autism is not a concern, as he's making great eye contact, his receptive language is on point, he's easily engaged, and communicates very purposefully/effectively even though he doesnt have many actually words yet.

    Not a R/O for ASD. My kid made awesome eye contact at that age, was engaged, attentive, and spoke in complex sentenses and has autism. Only a comprehensive eval can rule it out. My DS's pedi swore he didn't have autism, too.

    Not saying your kid has ASD, but with sensory issues and a language delay, there are red flags. I'd want a referal to a dev pedi. Especially with potential SPD or Coordination Disorder


    I agree with auntie. While I do not want to concern you even more, what you are describing are subtle, but still red flags. My son had great eye contact at that age as well and was very socially appropriate.

    Unfortunately, only time will tell and you have to be patient, although I understand the "unknown" is very difficult. That's what wakes many of us up at night. The thing is, even with a firm dx, the "unknown" never disappears. You still wonder what their quality of life will be, how much they'll catch up and in what ways, what they are going to be like in adulthood (live independently or with you, and if with you: what happens when you're gone...etc.).

    The only thing I will recommend is to treat the symptoms at hand. Whether it's ST, OT, PT, social skills...whatever deficits he's showing - address them, so he has the best possible chance to be his best possible self. The other stuff will sort unravel when the time is right and as he matures.

    Good luck!

  • MrsT0514MrsT0514 member
    edited August 2014
    @hopanka‌ thanks for the insight. I guess like you and other PPs have mentioned, we'll just have to rule things out one at a time, until we find a solution. Of course, the frustrating thing is that the therapist with EI said the other day that she's worked with many other kids with similar issues and an exact cause was never known, which has to be frustrating and puzzling for any parent (but in the end progress was made, so thats a plus!). I guess the main point of focus is that the child gets therapy and sees improvement though.

    FWIW, I decided to go ahead and do the m-chat and only scored a "failing" answer on 1 question, which is definitely encouraging. Though I'll still follow up thoroughly with the neuro at our follow up appt.
    Baby Birthday Ticker Ticker
This discussion has been closed.
Choose Another Board
Search Boards
"
"